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Our kids will live long lives and do beautiful things, let’s make sure we help them as much as possible.

Our kids will live long lives and do beautiful things, let’s make sure we help them as much as possible.

FromSynGAP10 weekly 10 minute updates on SYNGAP1


Our kids will live long lives and do beautiful things, let’s make sure we help them as much as possible.

FromSynGAP10 weekly 10 minute updates on SYNGAP1

ratings:
Length:
10 minutes
Released:
Nov 12, 2021
Format:
Podcast episode

Description

Episode 35 of #Syngap10 - November 12th, 2021  
HOLIDAY GIFTS - GET SRF #MERCH
5 days left to order Hoodies, T-shirts, other gear: 
- https://syngap.fund/LHC or https://syngap.fund/BKC
- Get your holiday cards at Minted.com and use code FUNDRAISESYNGAP 
 
FOUR STUDIES are enrolling now/soon:
- Dr. Andrade - Watch the video and let us know if you have an adult who would like to participate. https://youtu.be/WyhRDePe0Jc 
- Dr. Frazier - Reach out to info@syngapresearchfund.org to participate.  Here is the webinar. https://www.syngapresearchfund.org/webinars/improving-the-assessment-of-syngap1-by-creating-online-measures-for-parents-and-patients 
- ORCA - Once we get the greenlight from FDA we will start recruiting.  Here is a link with more info: https://www.syngapresearchfund.org/post/combinedbrain-duke-university-team-up-to-receive-a-prestigious-fda-grant 
- We have less than 20 spots left in this cohort of Ciitizen, sign up in the next 10 days: https://Ciitizen.com/SYNGAP1 
 
CRYPTO
- Jack Shi interview on 
https://twitter.com/cureSYNGAP1/status/1459165110862168066?s=20
https://www.linkedin.com/feed/update/urn:li:activity:6864944054384279552
https://www.facebook.com/cureSYNGAP1/posts/910882546460875
- Donate Crypto to SRF  https://syngap.fund/block
 
HELP US RAISE FUNDS FOR SYNGAP
- Facebook Fundraisers: http://syngap.fund/FBFun
- Giving Tuesday Fundraiser: https://syngap.fund/gt21
 
- What is SYNGAP1?  https://www.syngapresearchfund.org/home/what-is-syngap1
- Sign up for this 10 minute #podcast #SYNGAP10 here https://syngap.fund/10
 
#NFTs #crypto #unlockdefi #Bonfire #minted #Syngap #epilepsy #autism #intellectualdisability #id #raredisease #epilepsyawareness #autismawareness #rarediseaseresearch #SynGAPResearchFund #CareAboutRare #PatientAdvocacy #GCchat #Neurology #Genetics
Released:
Nov 12, 2021
Format:
Podcast episode

Titles in the series (100)

Over 900 families are caring for a loved one with the rare disease ”SynGAP” resulting from a variant of the SYNGAP1 gene. This 10 minute weekly podcast is for them. A quick summary of the latest news in the space. The host is Mike Graglia, co-founder & managing director of the SynGAP Research Fund. SRF is a parent-led, all volunteer public charity in the US that strives to accelerate research into treatments for SYNGAP1 so that we can help our loved ones in a timeframe that matters. Learn more at https://www.syngapresearchfund.org/